Support thread for those awaiting medical appts,tests and surgery

[ohyouBadBadkitten]

It seems that there is probably rather a lot of us who are impatiently waiting to see consultants, have tests or waiting for surgery. So a thread for you to vent in or post your 'hooray's'

me. Am waiting to see my cardiologist. been a bit of a catalogue of delays and getting lost in the system. I have a wonderfully supportive gp who has just calmed me down after me losing the plot a bit when I found I wasnt on the appt system.

How about you?

Oh yes my DH would love a care contract. It is nice to be so looked after. I have just about passed the test and am allowed out . As long as I take my BP monitor and surreptitiously check it in the loos!! Off I go! Will be lovely to see my friends.

Hi everyone
Slippers, so sorry to hear that you have not got any firm answers about your test results. The next few weeks are going to be tough for you and our family, so stay strong.

Ginger, I hope you had the most wonderful evening last night with your friends. Wow to the woman that doesn't let an annoyance like heart surgery stop her .

Evening ladies. Quiet day here today. I hope that means you are all having a good day with your families and feeling ok.

I had a lovely couple of hours with my friends last night, some of whom couldn't believe I made it. It was so good to get out of the house. Feel mostly ok today. BP is still on the low side but I've managed a little walk today too so definitely progress.

Really not enjoying my awareness of my heart beating when I try to sleep. Last night was getting me down so much I was crying all over DH and saying I wanted the closure thingy taking out. I'm not very rational in the middle of the night!

Stroke symptoms bothering me this evening but surgery was never going to make that go away. Oh well. Have allowed myself a little glass of wine to celebrate the end of a tough week. Cheers!

Hi everyone
I'm back to the hospital again tomorrow for a PM check, but this is my last scheduled appointment for 5 weeks. Hooray! George Osbourne needs some time to collect some more taxes .

I still cannot believe that I have the PM, because it sounds sooooo old. I really dislike them using a computer speed up and slow my hr, I don't think I'm ever going to get used to it. Sorry, just needed to vent a little. I hope I'm not too wobbly tomorrow, I'm going to be on my own. They are efficient, so I should be in and out quickly.

I hope everyone has had a good weekend. Ginger, I hope you slept better last night and enjoyed your wine. The weather's a bit gloomy, but not bad for walking in, so I hope you got out today.

Good luck tomorrow mad... I hope they are as efficient as usual.

And ginger... my very greatest admiration (and slight TBH) for you getting back on your feet so quickly.

I've just come back from yet another unplanned trip to A&E, this time for DD, who developed a sudden rash and went all floppy. By the time we'd been waiting an hour, it became clear that she really did not have meningitis at all, and by the time we'd been waiting three hours, she was still a bit feverish but fully back to her normal bounce. I approached the triage nurse to suggest that we freed up their queue by taking DD home and ringing the GP in the morning, and was very firmly told that if I attempted to do so I would be followed home by the safeguarding team. I rather meekly replied that yes, we'll wait another two hours, and the nurse informed me that, given that it was only the threat of safeguarding which had enticed me to stay, she was going to refer me to the safeguarding team anyway, as I clearly had something to fear from them at which point DH asked her if she had ever read Kafka and she looked baffled. So whereas I am of course grateful that DD does not have meningitis, I may now be back in the 'unfit parent' category, with all the meetings and paperwork that entails. But at least there's nothing wrong with DD.

I'm back at the hospital yet again on Thursday, too.

Ooops and yet to add for clarity (in case anyone from the local safeguarding team is reading this) we did stay until DD was fully examined and discharged by the doctor. I forgot to take the doctor's name, but she was about 25 with brown hair and an Irish accent and she had a dinosaur on her desk and made DD giggle.

Oh cripes BM. That's quite scary actually.

Mad I hope tomorrow goes ok.

Sorry I'm not around so much at the moment. Ive so much to do at the moment - stupidly busy beyond what my body is happy with really, it keeps telling me so. But it will settle a bit soon hopefully

BM, What a total nightmare. A&E departments seem to be v wary about safeguarding issues now. The hoops you need to jump through will protect someone else's child I guess. My friend's dd fell off a climbing frame at school (she's 5). Her parents were called, and told to take her to A&E. The A&E doctor insisted that the child recounted how she had hurt her head, and not her mother. Luckily the child was able to do so clearly, not all 5 year olds are so articulate, especially with a head injury.

I'm very pleased that your dd is bouncing back anyway.

Evening.

BM - what a nightmare, as if it's not bad enough having to wait for hours you then you are made to feel as if you've done something wrong. Glad she is better though. It is scary how quickly they go downhill and embarrassing when they perk up when the Dr appears though! I do worry when I have to take DS to A&E though as he has managed to break 3 bones in his 8 years!

Mad - I completely sympathise. I hate having to tell people I've had a stroke cos it's sounds soooo old. One friend even said "don't be silly, you're far too young to have a stroke". I tend to just be vague about a tiny blood clot travelling through the hole now instead. I don't like my little closure thingy yet either although I should if it stops me having another stroke! Perhaps I should focus on the 9-14% a year risk of me having another stroke without it.

First day on my own tomorrow as DH back at work. Not a lot planned! Ignoring any jobs that involve lifting things as not allowed yet.

Good luck tomorrow Mad, I'm sure you will be fine but you must be sick of waiting rooms.

Hi OYBBK - don't do too much! Listen to your body.

Night all.

Thanks for listening. I think I will contact the GP and HV in the morning, to get my side of the story in first.

I'm just trying to tell myself that the child protection system can do nothing: DD was fine, and although the doctor was too polite to say it, any idiot could have seen that. Last time I fell foul of them was because I was thought to be fabricating/somatisating/exaggerating my own health issues, and now... well, there's plenty of hard evidence precisely to the contrary.

But yes, I feel far too young for all of this. I hate being the only person under 70 in every waiting room, and hate it when I'm mistaken for a younger carer or relative of one of the other patients.

Back from hospital. I was seen very quickly, and no new problems. I'm still pacing 100% of the time, and in flutter 100% of the time. She did a threshold test which made me feel faint for a second, but skipped the speeding and slowing my hr because she could see that I was a nervous patient .

The problem is that I'm always nervous that when they fiddle with the PM, that they will break it somehow. I know that it's completely irrational, and that checking it makes it less likely to malfunction, but I can't separate my feelings from my brain. It's also hard having the tests and being reminded that I'm being kept alive by a piece of electronics.

I hope everyone is having a good day. OYBBK, I had hoped that you being away from this thread was because you were feeling much better. I'm sorry that you are feeling poorly and rushed off your feet with work and other commitments. Not too long until half term for a bit of a rest.

Now, where's my chocolate?

I don't think your feelings are irrational at all... it's a vulnerable thing. I think the surprising thing would be if you weren't nervous. I'm glad it went quickly, at least.

I'm OK. DD still isn't at her best and I think will have to stay home from the CM this week... given that I'm off sick anyway it's not a problem with work except that I really don't know if I'm capable of managing her for a whole day on my own in the house, and I feel as though I've already overstepped the mark in asking for favours from friends. But at least she's basically alright. I'm ready for the child protection squad to blast in and do their worst.

Mad - I agree with BM. Of course you feel nervous. It's only natural. And a lot more rational then me asking DH if he could get the DRs to 'take it out again cos I don't like it in me'! I am sure that in time you will just come to accept it as part of you. My father in law has had a pacemaker for years and is fine, well he has lots of other issues but none related to his pacemaker anyway. I think it must be really hard to come to terms with something actively working to keep things functioning but that's why they check it as you say. My anxiety comes from the fact that while almost all other parts of your body get to rest at some point, your heart is constantly working and it just makes me feel really vulnerable. I am waffling now but I hope you know what I mean. It is all done now and didn't you say you have no more appointments for five weeks? You should celebrate.

BM - my sympathies that you have whole day of child care to cope with and possibly more. Hope you are using Cbeebies and managing ok. I am confident the child protection team have better things to do than chase after appropriately worried parents who attend A&E.

I feel a bit more awake today. As if the GA is finally out of my system. Bit tired this afternoon but that's probably stroke related as had that before surgery. Off to see my usual GP again tomorrow for sick note and catch up as haven't seen him since op. no phone call back from cardiogy (surprise!!) but BP just about ok and am still alive so I'm sure things must be fine! mindless optimism, that will surely work

What a beautiful day today. I hope everyone is well, and that Ginger is enjoying her sunshine convalescence. Do your lifting restrictions mean that much as you would love to do housework or ironing, it is essential that you rest in the garden with a book?

BM, I will be thinking of you tomorrow. I hope your checkup goes well, and that you make a list of any questions that you have. If you're like me, you will forget them all. Is your dd feeling well enough to go to the CM yet? I hope that she is on the mend. Have you found someone to go with you, because it is so much easier to have a second person listening.

I know that just because you have chased and nagged to get his appointment, it doesn't mean that you like hospitals! Any chance of them booking in your next checkup tomorrow, so you don't need the constant email trail next time? Probably not, but worth asking.

Thanks for thinking of me. A fantastic and wonderful friend has rearranged her entire working week to drive me to the appointment tomorrow... honestly, she deserves a nomination for sainthood, and with kindness like that I cannot cannot possibly chicken out of going. I've given her a copy of my everything-I-will-probably-forget-to-ask list although I really only have two questions: can they provide any explanation of why I feel so much worse since surgery and could they suggest what I might do about feeling so ill? My guess is that the consultant will tell me that my pain and fatigue are not cardiac and therefore outside of his remit, but I nevertheless hope he'll have some ideas as to whether/how I seek further medical and/or other forms of help. But I suppose my fear is that the surgery will have revealed or caused further problems with my heart.

How are you doing? Weather has been fantastic here, too. I took the DCs out into the garden with a bowl of water to splash in and DD had a wonderful time trying to make DS as wet as possible... neither of them entirely at their best but probably sufficiently well for our very confident and cuddly CM to manage. Another friend came round with her camera, too... so I've got her pictures to look forward to.

Well done to your friend, that is the best outcome. A lift to the hospital with no children in tow, and a friend with you as well. Good luck with getting some answers .

Hi all. Hope all is well with everyone?

Hope your appointment goes well tomorrow Breastmilk. I hope you get the answers.

I had my eyes checked on Monday and they are still the same as they were last time :) My Opath said that's good news as they have not deteriorated as quick as he thought they would, so hopefully they stay the same :)

My GP did a Pregnancy test today. The test came back as positive. DP and I are in shock a bit as I was on the Pill and even though we were going to try for a baby we wanted to be more prepared and for my health to be stable.

We are also worried as I have a broken shunt that needs to be repaired, I've been drinking alcohol at the weekend :( and I've had a lot of X-rays a few weeks ago on my abdomen. I've got a follow up appointment with my GP on Friday to discuss options and the risks of following on with the pregnancy.

Hope everyone is enjoying the nice weather :)

Congratulations

I know it's early and you are understandably cautious, but good news. Don't feel bad about drinking alcohol. I think most babies are slightly pickled in the early days, mine certainly were. Hopefully, the GP will advise you about the risks of the x-rays. I imagine you will be referred to an obstetrician pronto, and will be checked and scanned so frequently that you may as well camp out in the hospital.

I'm going to cross everything that this works out well. Great news about your eyes too.

Well... there's some unexpected news

As much as sensible logic would tell you this isn't the ideal time for you to be pregnant... really, there's never an perfect time. Certainly, you could have waited until your health was more stable... but MN is full of stories of women struggling to conceive because they'd been waiting until they reached a certain level in their career, or put down a deposit for their mortgage, or lost weight, or many other things. You and your DP will love and be entirely devoted to your newest DD or first DS: that is the main, main thing.

If it's any reassurance, DS was conceived just before I had an MRI scan, amidst an immensely stressful few weeks in which I having a few glasses of wine most days: he is fine. As far as I understand it, the risks of surgery during pregnancy are minimal after the first trimester, too.

How are you and DP feeling? You must be a bit stunned...

Backpack - Wow!Congratulations, that must be a surprise. I know you must have many concerns and I'm glad your GP is making time to think about all the complexities. I really hope he/she can reassure you. I so want this to be ok for you.

In terms of the wine I really wouldn't worry. I drank quite a bit of wine just before realising I was pregnant with DS1 and he was fine. Do you know how many weeks you are. I'm sure many women will have had successful pregnancies after needing some X-rays. I imagine you will need some neurosurgical advice about the shunt and about your health in general. Did you have difficulties in your previous pregnancy?

Great news about your sight check.

Mad - yes, I have been relaxing in the garden, and have been taken out to lunch twice in last two days!

I am definitely feeling better generally. Still aware of my heart racing at times, but BP a bit more sensible. Occasional very mild uncomfortable feeling in my chest which I have read often happens for a while. I can see that I could get to a point of feeling ok and possibly doing more than I should so am trying to make sure I don't do too much.

BM - what a great friend you have. That is much better than going alone or with children! I hope all goes well. Stick to your list and ask all your questions. I hope you at least get some good answers. Thinking of you tomorrow.

How are you Reeny, OYBBK and Slippers and anyone I have forgotten?

Thank you for all of the Congratulations :)

The GP thinks I'm roughly 4 weeks. As my periods are very irregular through the Pill.

The only problem I had with DD's pregnancy was SPD. (I was diagnosed with IH when DD was 17months old). I phoned my Surgeon to tell him, his secretary is going to get him to phone me back when he is finished in Theater.

DP and I are very stunned but really happy. I keep thinking its selfish to bring another baby into my life at the moment. This baby will be loved so much by everyone around him/her.

My GP has advised I try to cut down on the strong pain killers and he will wean me off the other tablets from tomorrow when he has looked into what is best for to take. I am in a lot of pain with my head and I've missed taking DD to the park through the sun hurting my eyes. DD was still happy with DP taking her to the park but she kept asking me to go aswell.

I've been talking to someone who has IH and she said her IH went into remission whilst she was pregnant then when her DD was born she got a good few months before it came back but its not as bad as it was before her pregnancy, her DR's told her it would be best to terminate the pregnancy but she went ahead and she said its the best thing she has ever done.

I'm thinking of you Breastmilk, Hope your appointment is going/gone well.

Hope everyone is doing good :)

Wow Backpack!! Congratulations!!!! :) Thats pretty amazing. Good news about your eyes too :)

I hope its gone ok today BM.

Still hanging in here! Lots of feeling sick/faint today but I've got through so far.

I'm home. Thanks for all your kind wishes.

My ECG and echos are all fine which is great. All previously vague and euphemistic mumblings about 'the er ahem risks' were replaced by a clear assertion that 'you are no longer likely to suffer a sudden cardiac death', which was also reassuring.

However, the consultant tried to reassure me that one can live with chronic and unexplained lifetime fatigue by telling me all about his brother-in-law, who like me was top of his year at university but had to give up accountancy because he was too tired but nevertheless manages occasionally to go rock climbing. My dear friend congratulated me on my self-restraint in declining to tell him that I don't really give a about rock climbing but would simply like to be able to keep my job and/or take the kids on an occasional outing to the beach.

Really, there's nothing left that cardiology can do for me. I know that.

So I'm left waiting to learn whether the fatigue specialist will see me. If she will, I'd be prepared to pay to jump the queue. But in the meantime, is it worth going back to the GP to ask what else anyone might be able to do to help in the short term with just any possible sort of something which would just enable me to take the kids on a fun outing somewhere exciting and sunny simply to boost my mood for a bit... or am I grasping at straws which don't even exist?

I think I know that the straws don't exist.

BM, it is really good news that your heart is healthy and that the treatment has been successful. It means that now you can look forward to life with your family without the extra worry of your heart causing you problems. I know that it doesn't answer why you are tired and in pain, but at least you know now that it is not a heart problem. That should be a reason for celebration .

I'm sure the fatigue specialist will see you now, it's just a matter of when. The fact that cardiac problems can now be ruled out will only help her work out what is wrong with you. Don't forget that you have taken a real emotional battering recently - Finding out that you had a problem with your heart which put you at risk of sudden death coinciding with the birth of your children.

I would try and be good to yourself. Maybe go for a massage, or if that's not your thing then something else indulgent.

I had a phone call from the hospital this evening. They have a cancellation appt for me to see the EP consultant tomorrow. That was rather a nice surprise - no time to get all anxious about it.